IMPROVEMENTS: I can walk up the stairs very fast…I actually fly up the stairs! Going down have improved also because I don’t have to hold on to the rail any more and, depending of the size of the step, I can walk down well, without shaking or looking like I am drunk.
WORSENING: The cognitive issues are worse. I don’t react too well to them because they make me feel dumb! I prefer physical pain to this! I would take the chest pains instead of not feeling in control of my own mind! I have also noticed that, sometimes, it is a little bit more difficult for me to go from writing Italian to English in a matter of seconds…and I also feel that I might have been so good before and that, now, I am not the way I used to be!
WORSENING: The cognitive issues are worse. I don’t react too well to them because they make me feel dumb! I prefer physical pain to this! I would take the chest pains instead of not feeling in control of my own mind! I have also noticed that, sometimes, it is a little bit more difficult for me to go from writing Italian to English in a matter of seconds…and I also feel that I might have been so good before and that, now, I am not the way I used to be!
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My 13th Tysabri Infusion: Month of January 2010
On January 27, on the day of my birth name (Saint Angela) I returned to Hopkins to receive my thirteenth Tysabri infusion and to have the 6-month checkup with my doctor, Peter Calabresi.
The usual physical tests that are done to check the improvements and the worsening of our mobility, were done with the new nurse pratictionar that I immediately loved and that I found to me amiable, friendly and cheerful!
I passed all tests without too many problems and, apart from slight weakness of the left side of the body, which has always been that affected by the disease more than the right, I proved to be very strong! Although I do not really like my new look, a quite some time now, thanks to the exercise that I do, the muscles of the legs and arms have become big and strong and I am glad that I have been able to prepared my body so I can better deal with other possible future relapses. I look like a bodybuilder, but I better not complain about this because I know how things are when I am weak and when I am sick and I prefer to be this way! (…I am wondering if I am gaining weight in the process, though…).
When the doctor came into the room, I was glad to see him, but not as much as I used to me in the past because I doubted thathe was going to listen to me when I spoke about Dr. Zamboni’s discovery, but I was wrong.
I've been asked not to say anything about our conversation to others and because I do respect his request, I can not explain exactly what has said but I can tell you that Hopkins has possibly changed my mind... As for me, I can say that, next month I will have to do my 11th MRI because we need to see if there is a way to find out why I am having the cognitive problems that I have been facing since I have started taking Tysabri.
The news that he gave me and that made me very happy were about the importance of vitamin D and the fact that the lack of this vitamin makes us more vulnerable to this disease.
I was told that I'm number one and the best candidate (!!!!) in the study of vitamin D that he is doing and for which I have raised funds in the past and I proved to be the one who is reacting betterand that is showing the results that they wanted to see!
I has been told that I was the best candidate because I had very low levels of vitamin D in my body while having a very high levels of a substance which is not good for our bodies and that, thanks to the 50.000 international units of vitamin D that I take once a week, have been lowered a lot…just like the doctors expected and hoped for. The Vitamin D supplementation seems to be doing something good and it seems to be keeping the inflamation that causes relapses at low levels and this is great!
The rest of the month went really well and I felt good.
The usual physical tests that are done to check the improvements and the worsening of our mobility, were done with the new nurse pratictionar that I immediately loved and that I found to me amiable, friendly and cheerful!
I passed all tests without too many problems and, apart from slight weakness of the left side of the body, which has always been that affected by the disease more than the right, I proved to be very strong! Although I do not really like my new look, a quite some time now, thanks to the exercise that I do, the muscles of the legs and arms have become big and strong and I am glad that I have been able to prepared my body so I can better deal with other possible future relapses. I look like a bodybuilder, but I better not complain about this because I know how things are when I am weak and when I am sick and I prefer to be this way! (…I am wondering if I am gaining weight in the process, though…).
When the doctor came into the room, I was glad to see him, but not as much as I used to me in the past because I doubted thathe was going to listen to me when I spoke about Dr. Zamboni’s discovery, but I was wrong.
I've been asked not to say anything about our conversation to others and because I do respect his request, I can not explain exactly what has said but I can tell you that Hopkins has possibly changed my mind... As for me, I can say that, next month I will have to do my 11th MRI because we need to see if there is a way to find out why I am having the cognitive problems that I have been facing since I have started taking Tysabri.
The news that he gave me and that made me very happy were about the importance of vitamin D and the fact that the lack of this vitamin makes us more vulnerable to this disease.
I was told that I'm number one and the best candidate (!!!!) in the study of vitamin D that he is doing and for which I have raised funds in the past and I proved to be the one who is reacting betterand that is showing the results that they wanted to see!
I has been told that I was the best candidate because I had very low levels of vitamin D in my body while having a very high levels of a substance which is not good for our bodies and that, thanks to the 50.000 international units of vitamin D that I take once a week, have been lowered a lot…just like the doctors expected and hoped for. The Vitamin D supplementation seems to be doing something good and it seems to be keeping the inflamation that causes relapses at low levels and this is great!
The rest of the month went really well and I felt good.
My 14th Tysabri Infusion: Month of February 2010
This month was extremely hard for me and for my family. My mother in law lost her battle with uterine cancer, just like her husband lost his with colon cancer only 3 and a half years before. We knew that the end was approaching and we were able to get family members together and to have them present when the time came. She was surrounded by the family when she took her last breath. Obviously, this period of time was a little tough on me physically. I wasn’t able to take care of myself at all during the first weeks of the month and, emotionally, it was very hard for me to see my husband suffering once again because of losing both parents in such a short time.
TM